I have been putting off writing this blog until I could gather my thoughts.
William has been maintaining this past week which is amazing. We went a full week to school, which is great because it has been quite some time since we were able to go all week without sickness or doctor appointments. We have had a few non-stable weeks, and we are still struggling with seizures and playing with medications.
With this disease, your child can wake up without a skill that they had the day before. It is because of waste build up in the brain cells. That is why I cherish all of William’s smiles. Some children lose the ability to smile while others keep it until the end. Every day and every smile are cherished!
It also makes managing medicines and seizures extremely hard because, with this progressive disease, different areas of the brain are constantly being affected. Medicine that worked last week will not be as effective now because the brain chemistry has changed. There is no rest in this area. William’s brain is constantly changing, and mine is always working trying to figure out what is going on, why this isn’t working, what changes we could make, and so on. I am very grateful for my mom who is my sounding board, listening to me go over every scenario sometimes multiple times, knowing she has no clue what I am talking about but is just there to listen.
This might be a controversial topic, but I have had trouble lately understanding why God would want William to suffer so much. I didn’t think I was angry with God, but I was, and in turn, I distanced myself from him. These were very hard weeks for me; without Him, darkness entered, and honestly, it was hard to function. It was when I reached my lowest that I cried out, “Why would you want this?” I felt his presence answer me, “Braley, I am hurting just as much as you are. I didn’t want this to happen. I have lost a son as well and weep for you. I am here to comfort you, please come to me.” This has helped me tremendously. There is darkness and suffering in this world, but we have a loving God that cares for us.
It warms my soul to know that others are reaching out and are concerned about our family. You will never know how much it means to someone until you are in a similar situation. God uses people to show us He cares; for that I am sure.